bone marrow transplant and my mds RCMD 11Q-Y

[Colin Cosh]

Hi ,I am colin cosh a new member living in shepperton middlesex England.
I have been under review with falling blood elements since 2005 I was
diagnosed with MDS Jan 2007 with the type RCMD. I became transfusion dependant in Dec 2008 . I have had increasingly regular transfusions since then .at present about every 3-4 weeks my platelet and neutrofil count are about the same as a year ago at 36 and 0.3 . I was offered a bone marrow transplant lsat july with a 9/10 female match . Ihad read the booklet 7 stages to recovery and rather feared the risk of a transplant . I am 70 in March but I
am in reasonably good health they think to take the chance. My iron level is
about 1300 ie over the safe limit . Exjade is not approved by our authorities, is it as risky as Desferal ? ,it would be easier to take as a drink. If my haemoglobin or transfusion need was say every 2-3 months I think I would
be tempted to forgo the risky bone marrow rransplant. but that is not the case, amd in 2 weeks I will need to make a decision on that. well thanks for your time . if you have any views on my circumstances I would be very pleased to read them

[Mary4Mike]

Hello Colin and Welcome!
I can appreciate your position very much. My husband was in somewhat of a similar position with making the transplant decision. He lived with the diagnosis longer than you have and tried all 3 of the offered drugs for this disease. Only one, Vidaza, gave him a 15 month reprieve from transfusions. After that, he became transfusion dependent again requiring blood every 2 weeks. He used Exjade for over a year, but our copay was over $35,000 a year so we had to forego that route. He tried Desferal for months at a rate of 2 times a week. It really did not move his counts the way Exjade did. I did not realize that Desferal was risky, but there have been warnings posted on this site about Exjade.

On September 29 and 30 of 2009 he underwent a bone marrow transplant from his sister who was a 10/10 match. He too, was in good health other than the MDS. The doctors felt he was a good candidate because of this, despite his age – 64. We also read "the literature" out there on transplant. It is scary, but so is the prospect of lifelong transfusions and dealing with the iron issue. Things have gone well so far. The pretransplant chemo was a breeze compared to doing Dacogen for the MDS. Mike has had minimal complaints. His main issue has been elevated liver enzymes due to the excess iron. This is being addressed by phlebotomy. He had his first last week. It will take a while for the numbers to come down, but we are happy to be doing this in a nonchemical way. He has done an awful lot of chemicals since being diagnosed.

I guess the thing that made up our minds about having the transplant was that his cytogenetics became abnormal. He was afraid of going into leukemia where the success rate and the ease of transplant dramatically decreased. It is a hard decision to make, but if you do decide to go for it, don’t read anymore statistics. Everyone is different……one size does not fit all. When we finally decided to go for it, we put our faith in the Lord and we have never looked back!

All the best to you in your decision making. If you have further questions, please feel free to ask.

Mary

[billboy]

Hi Colin,

You mention that a serum ferritin level of 1300 is above the safe limit – perhaps, but different hematologists have different cutoff points for initiating iron chelation. Exjade, deferasirox, certainly has some significant risks, namely to one’s kidneys, liver and digestive tract. You’ll find these identified by just googling Exjade. Moreover, just today I read of new concerns and what caught my eye was that it is now contraindicated for those with platelet counts below 50,000 (mine is currently 34,00 and I see yours is 36,000). See:

http://www.ashp.org/import/news/HealthSystemPharmacyNews/newsarticle.aspx?id=3274

I have taken a lot of Exjade having received 100 units of packed red blood cells to date. Further there is considerable debate over just who should take this drug and then there is the cost. I’m not familiar with the other iron chelator you mention in terms of risks. You’ll have to make the cost, benefit, risk tradeoff. My prognosis is not as favorable as yours, so I may push back if my hematologist suggests more Exjade.

Hope your transplant is a huge success!

[marlene]

Thanks for the update on exjade

[Colin Cosh]

Hi Mary it was good to read your news about your husband Mike, I am pleased
for you he is doing well , I had my 5th bone marrow biopsy yesterday, next
wednesday 3rd I see the specialist to discuss the next move. best wishes Colin

[Colin Cosh]

Hi Billboy thanks for your reply, this iron build up is a real problem , it is would
be wonderful if it could be removed before transfusion, but I suspect it is an
important part of the red blood cells function to transmit oxygen untill the cell
dies. As you know we have our national health service , but they will not always fund every drug requirment, it would need to be shown as cost effective,
Hope you get some remission with your mds
best wishes Colin

[Colin Cosh]

Hi Marlene glad you found some thing useful in my comments on exjade,
I only know a about the subject that I have read in publications
best wishes Colin

[jimkufis]

Hi Colin, Jim Kufis here. I had 10 tx of PRBC (20 units) last year and my ferritin level rose to 2800. After a couple of months on Exjade the ferritin level dropped to the 800 range. I found this is quite an effective drug. The drug is not without side effects but it does work.

[jimkufis]

Hello Mary. Jim Kufis here. For Exjade I suggest you look into Canada Drugs on your browser. You can get Exjade through Canadian pharmacies for a LOT LESS than the $35K co-pay you indicated. I am getting my lenlidomide (Revlimid) through Canada Drugs and this truly makes the drug affordable without insurance coverage.

[Mary4Mike]

Hi Jim,
Fortunately Mike is now in a position to remove his excess iron through phlebotomy because his HGB is presently 16.8. Because of the possible risk to kidney, liver, and digestive tract, his bone marrow doctors won’t even consider Exjade. These are a few of the body systems that are most likely to be effected by graft versus host disease.

I will keep in mind the Canadian web site for future reference in case we run into another situation where our insurance doesn’t pick up a drug. So far, we have been blessed to have them pick up the post transplant drugs.

Thanks again,
Mary

[jimkufis]

Hi Mary,

Mike is doing exceptional well with a hemoglobin reading of 16. Most of us with MDS have low readings. I wish Mike the best on defeating this disease.

Jim

[Colin Cosh]

Hi folks since my last posting I have been told that it is too risky to do a bone marrow transplant on me due to my other condition of mastocytosis. I am now dependant on a 3 weekly blood transfusion of 3 units. I am now 70 and have had my MDS for more than 4 years. I am concerned as I think I have said before about my iron overload, but after reading an article by MEDSCAPE MEDICAL NEWS , it says perhaps there needs to be more evidence that iron overload causes damage to our organs. I found this article by entering a search on GOOGLE Entitled "Iron chelation therapy" I then clicked on " Iron chelation therapy in MDS by A statements 19 May 2009 . I was able to print the article . when I tried again to access this article for you by using the web address at the bottom of the article it would not display it, that is why I have explained how I came by it . In spite of having a national health service here, we cannot expect the service to approve the payment of any drug , it has to be shown that it is cost effective . It looks like it could cost about £15000 per year for treatment. Exjade is not available in this country. The 3 week periods for transfusion come round to quick , winter has returned here in the south after a mild spell, I am still finding the energy for a moderate amount of gardening. Best wishes Colin

[jimkufis]

Hello Colin, Jim Kufis here. I tried Exjade for iron overload and found it to be quite effective. You can get this drug through Canada Drugs for a fraction of the cost in the UK. I take Revlimid and the cost in the USA is $11,000/month. I get this drug from Canada Drugs for $266/month. These drugs are generics but they are as effective as the name brand drugs.

[Colin Cosh]

Hi , since my posting of the 02/18/10 Ihave been advised that a bone marrow transplant is now considered to risky for me to undergo, this is greatly due to a condition I have of Mastocytosis , which is an overload of mast cells in my bone marrow, the specialist fear that the chemotherapy which preceeds a transplant
would cause a release of toxins by the dying Mast cells which could be fatal
So I have to accept that blood transfusions at present are my only form of treatment ie every 3 weeks .I spoke in my last news about my iron overload,
at present I am about 2000 , I am in a national health service area that does not fund
iron chelation therapy. I have also read that there needs to be more understanding
about the long term effects of iron overload.. particularly in the light of the risk
of organ damage from chelation therapy. Billboy;s reply on that subject was most useful to read , also those views from the rest of you , thanks for that Colin

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